Trying to Catch His Breath With a Hole-Ridden Safety Net

I'm sitting here on a bed that constantly readjusts itself. It's terribly annoying and when I lay down on it there is a low rumbling of the motor that pushes air to my legs and sucks it from butt. The noise makes that grey matter between the ears in my head shake. Probably a malfunctioning bed, but it's nothing to complain about given what is sitting next to me, 2 meters over, in the next adjustable bed.

I'm at Carteret General Hospital on North Carolina's scenic Crystal Coast, where I live. My beautiful, precious 6 year old son was admitted this past Tuesday for Pneumonia. It started 6 days before on a Wednesday. He asked his kindergarten teacher if he could lay down. Odd behavior for such an outgoing kid, one of the class favorites who even at 6 already seems quite the ladies man with 2 Lilies, a Tanzania, and an Ellie running up to him each day when I drop him off for school. Along with 2 Charleses, these friends are just the ones we hear about! When I picked up him from school he was clearly exhausted and went to bed early without his dinner.

On Thursday we kept him home as he was obviously feverish and had flu like symptoms. He was getting worse, but then he tricked me on Sunday. He was looking a little better and was more responsive. We played for while, building bugs and monsters from blocks and putty, and chatting about how we should be getting the second season DVDs of Star Wars: The Clone Wars in the mail the next day. But thatMonday [EDITED: Thanks to my wife for the clarification] night was horrible and he started vomiting every time we tried to give him medicine or liquids. He wasn't eating and his fever was getting pretty high, up to 103. I drugged him the best I could with kid's OTC meds and on Monday my wife and I attended to his needs however we could.

We should have taken him to the Urgent Care right then and there. But we didn't.

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My poor decision-making capabilities in this regard was influenced by my lack of experience with any major disease (I have an immune system of steel, fortified by coffee and whisky), and our lack of insurance. My family includes four of the 49.1 million uninsured people in the United States. I've comforted myself that we couldn't afford private insurance, which we can't, but at least we were all relatively healthy and never seemed to have problems.

That was until my eldest started kindergarten this Fall. Now he is frequently at home for a few days with colds or mild flus. Still it's nothing that popsicles, Dimetapp and a bunch of TLC can't take care of. I work from home as a consultant and writer, so it didn't bother me too much if and when I get infected, plus I am there to help my family when they fall ill.

But recently my mindset has become affected by our position. I tell my kids not to do things that I certainly enjoyed doing as a kid, like don't climb high on trees, run a little slower on the trail, watch out for roots and stones! It's not just the usual parental concern either. I'm consciously thinking "oh my god, I cannot afford to fix them if they get broke!".

This is the luxury gap between the between the 20% of nonelderly americans who are uninsured and the rest. The luxury is, of course, being able to just walk into a doctor's office and see them at the appropriate times. It is easy to discount this minority since most are at or near the poverty line. But many of the uninsured are like myself and just can't seem to make the numbers work for a family of four each month by adding on private individual (i.e. non-group discounted) health insurance. Especially when you factor in the myriad other insurances we already pay: renter's or home, wind and hail, flood, car, life, etc. It's not that we are irresponsible, but the numbers. just. don't. work.

When I started my family 6 years ago, I was on a path to a career in research and teaching. We had amazing health insurance through my institution and my wife and children-to-be were generously covered, no-questions-asked by the state of Pennsylvania during, and a year after, the pregnancies. We never saw a bill. After I got "real jobs" upon completing my Masters degree, I entered a grey zone of contract teaching and research employment at universities. With a decent, regular salary we were ineligible for state aid, yet didn't make enough to afford extra costs. Furthermore, the quality of the insurance kept lowering until I wasn't even sure what I was paying for - even as the premium costs were rising.

It reached rock bottom last Spring when we attempted to actually use our insurance that I bought for $1400 every six months while a contract lecturer and beginning PhD student at a North Carolinian university. My boy was starting Kindergarten and needed to be current on his vaccines. Of course, both kids needed to be current, so we took them in one-by-one, got their shots and check-ups, handed over the insurance information, paid our co-pay and went on our way. Never thinking about it, assuming that insurance would do the job we paid them to do.

Exactly 6 months later we received bills, after I no longer had insurance (I had to leave my phd for variety of reasons), and addressed to our kids' names and not mine, the policy holder, for substantial amounts. Apparently, my daughter owed over $400 and my son owed over $1600 to the doctor office, which was the net left over after the insurance contributed about $200 for each visit.

Naturally, I was dumbfounded. I already paid $1400, which I had to ask my department head for an advance to cover their own insurance (there were no monthly payment plans offered by the way), but they only covered about 20% of the medical bills? Ironically, as an uninsured I would have been able to get a discounted rate and probably pay less than the amount I actually owed after the insurance company gave their dues.

I still don't understand it and they are unwilling to work with me. Hence, the bills have gone to a collection agency. I'm refusing to pay for the time being and my kids, at 4 and 6, have their first negative credit rating. Presumably, anyways, since the idiots never fixed the billing information.

This burn, though, has contributed to a deep mistrust in the insurance industry, further feeding my indignations about acquiring individual care - of course we couldn't afford the monthly premiums anyways so the point is moot.

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By Tuesday we weren't left with any choice. My son had just gotten out of a bath and though he wasn't cold, his hand and his feet were blue. I'd never seen it like that before. My wife laid it down and we were going to the Urgent Care. We all got dressed and heading over there early. He was miserable, crying in pain cause he couldn't get enough oxygen. We were scared that we might have waited too long. Hyperventilations were eking their way out.

At Urgent Care, it is first-come first-served. We waited, about 3rd in line, while my son writhed in his mother's lap. My daughter, being too young, fooled around and chattered, clueless to the gravity of the situation. He whispered to his mother that he couldn't breathe. In a desperate voice she urged me to tell the receptionist. I got up and pathetically explained, "excuse me, but my son is having trouble breathing. He says he can't breathe." The receptionist must have seen the scare in my eyes and she hastily called back to nurses to go into the waiting room and check on us. It was apparent that we weren't exaggerating and we will be forever grateful that they took our plea seriously.

After an initial screening by the nurses and the doctor on-call, who first diagnosed the pneumonia based on symptoms and lung sounds, they sent us across the street to the Emergency Room. But, in fact, it was my wife who first recognized all the symptoms and was our little wonder boy's advocate. She had pneumonia 12 years ago and nearly wasted away from it. It took years to recover her strength and more of her lung capacity. She made that diagnosis and I didn't want to believe it, because I knew a hospital visit was going to financially crush us. I never said it, I can't guarantee I even was thinking it at the time. But that is part of the mindset when you are uninsured. You don't need to consciously think about it, the nagging dollar bill is waved in front of your eyes every time a health concern surfaces.

The x-rays confirmed our fears, he had a very large mass of pneumonia in his right lung. Right in the area he was trying to tell me earlier was hurting him. Right in the area that I so foolishly shrugged off as "probably just sore from all the coughing". Subsequent tests showed the culprit, Streptococcus pneumoniae, was in his blood cultures as well. So this microbial nemesis, who felled thousands of our ancestors only a hundred years ago - so much so that by 1918 it surpassed Tuberculosis as the leading cause of death until the wide use of antibiotics - has infected the blood stream of my beloved son.

The symptoms of pneumonia have changed little as described by the famous medical scholar Hippocrates, who wrote in the 4th century BCE: "If the fever be acute, and if there be pains on either side, or in both, and if expiration be if cough be present, and the sputa expectorated be of a blond or livid color, or likewise thin, frothy, and florid, or having any other character different from the common.[...]" It does not sounds pleasant, nor is it.

By a stroke of luck, the strain he is battling off is one of the weaker strains, easily killed by Amoxicillin, an affordable antibiotic. Under the close supervision of an extraordinary group of nurses and pediatricians, the Amazing Elliot has made a wonderful recovery and will hopefully go home tomorrow morning. He couldn't be happier. He woke up this morning sad with tears welling up in his eyes. He must have drawn about a dozen pictures of himself outside with his dog Peaches under the sun. Being in a hospital, even for a handful of days, is wearisome and he's had enough. Especially since he feels good right now and sick of the beeping sensors and tangled tubes, sick of having me fetch to jug for him when he has to pee - which seems to happen hourly thanks to the constant IV drip.

[caption id="attachment_446" align="aligncenter" width="440" caption="My son outside in the sunshine, with his dog Peaches and the get well balloons his Uncle Ryan sent him. Drawn on my Kindle Fire doodle app."][/caption]

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The mindset of being uninsured is not , well... reassuring. It causes you to take risks that your peers do not need to take. It creates a perpetual fear that anything you do will eat up your life savings or kill you. Indeed, it has for us on one occasion. Nearly a decade ago when my wife was in constant pain for over a day, and after she could not take it anymore, I rushed her to emergency room. They had no clue, it was a worthless visit. They just looked at us dumbfounded and tried to get her to take antibacterials and be on her way. They even did unnecessary x-rays.

All of that was of course billed to us. We had saved up for 4 years to visit her family in Sweden. Every last cent, about $4000 was wiped clean. Apparently the practice of fleecing the uninsured was a commonplace action at this central Californian hospital and we were part of class action lawsuit against them. So many people were involved and the lawyers' fees so high that we barely recovered anything from it.

Despite my mistrust of the insurance industry, its not like I wouldn't jump at the chance to grab affordable coverage. But the coverage I am offered as a self-employed citizen scales with how much I'm willing to pay. For a lot of money, my family can be 80%+ covered. Like I said before, these numbers just don't work. Though our expenditures are low, I don't make enough money. For less money we can be covered for emergency situations. But how do I know they will keep their end of the bargain? Even if I get scraped out of a $1000, it's sadly not enough to fight over in court given the costs involved in that battle.

Being uninsured is an entrapment. And you know it's a trap but you have no choice but to proceed, which means you sometimes proceed overcautiously. This is why the mindset is different. It's not overprotection of the children as much as it is the overprotection of the family unit - keeping us and our lifestyle intact.

Most of the uninsured in this country aren't lazy, freeloading hobos who don't wanna work. They span a wide variety of demographics. As a 30 something, white male with advanced college degree who works full time as a self-employed consultant and writer are you surprised that I cannot afford health insurance for my family? In fact, the majority of uninsured are in my age range and are full or part time workers earning incomes above 100% the federal poverty level. The fact of the matter for many of the uninsured is that employment-sponsored coverage has been in decline due to the escalating costs of health care. Employers can't remain competitive and pay double the costs they were paying a decade ago for insuring their workers. An October 2011 report from the Kaiser Commission on Medicaid and the Uninsured found that

"Job-based coverage has been gradually declining since 2000, even during years when the economy was stronger and growth in health insurance premiums was slowing. From 2007 to 2010, the percentage of the nonelderly population with employer-sponsored coverage declined by approximately 5%.[...] Even when workers can afford coverage for themselves, the cost of health insurance for their families is often prohibitive. Employees in firms with many low-wage workers are typically asked to contribute a larger share of the insurance premium than employees of firms with fewer low-wage workers (38% vs. 27% of the premium costs for family coverage). Declines in dependent coverage accounted for more than half of the recent decline in employer-sponsored insurance."

Uninsured people look just like everyone else. They might look like they can easily afford the premiums and in fact might earn salaries similar to yours. But every family's situations and employment-based coverage options are unique and this goes far beyond stereotypes of the "working poor". My son could have suffocated from his pneumonia had we not sucked it up and rushed him to the hospital on Tuesday morning. If we were able to see a doctor a day earlier, he perhaps could have been treated at home as an outpatient with antibiotics. I don't know what our final bill will be when we leave tomorrow morning, right now I don't care. All I know is my son got better under the supervision of a wonderful team of nurses and pediatricians. My community has income-based charity care which will hopefully reduce our bill to a much more manageable sum. All minor details when the stakes are as high as your children's lives. Plus, we can sleep in beds without motors.

**Graphs in this post are from the Kaiser Commission on Medicaid and the Uninsured's report The Uninsured: A Primer, Key Facts About Americans Without Health Insurance, October 2011. Pdf available for download here.

The views expressed are those of the author(s) and are not necessarily those of Scientific American.

ABOUT THE AUTHOR(S)

Kevin Zelnio

Kevin has a M.Sc. degree in biology from Penn State, a B.Sc. in Evolution and Ecology from University of California, Davis, and has worked at as a researcher at several major marine science institutions. His broad academic research interests have encompassed population genetics, biodiversity, community ecology, food webs and systematics of invertebrates at deep-sea chemosynthetic environments and elsewhere. Kevin has described several new species of anemones and shrimp. He is now a freelance writer, independent scientist and science communications consultant living near the Baltic coast of Sweden in a small, idyllic village.

Kevin is also the assistant editor and webmaster for Deep Sea News, where he contributes articles on marine science. His award-winning writing has been appeared in Seed Magazine, The Open Lab: Best Writing on Science Blogs (2007, 2009, 2010), Discovery Channel, ScienceBlogs, and Environmental Law Review among others. He spends most of his time enjoying the company of his wife and two kids, hiking, supporting local breweries, raising awareness for open access, playing guitar and songwriting. You can read up more about Kevin and listen to his music at his homepage, where you can also view his CV and Résumé, and follow him twitter and Google +.

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